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I have been just been told i will have TN forever..

Posted , 8 users are following.

tanee2
tanee2

I wondered if anyone had tips on how not to get depressed. Ultimatley im getting angry or impatient with people because i look normal no oje understands the intense pain.

Are there any tricks i can do when the pain comes on full effect to stop it/ relieve it?

So far I use plastic cutlery, drink out of straws and wrap a scarf around my face. Im taking 400mg of neaurotin x3 a day and then x2 20mg of amitriptyline.. When the pain is bad i take an exta 100mg of neaurotin as and when i need it.

My teeth are so sensitive they have constant pins and needles, to touch them makes my eyes water if a fork comes close. I can only chew on one side as if i try to use the other i bite right into my lip and have a nasty cut, which annoyingly unlike my actual lip i can actually feel. When I clean my teeth i kind of cry and moan as it hurts so much..

Any pain relief tips???

Thank you in advance x

0 likes, 19 replies

19 Replies

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  • eddie13
    eddie13 tanee2

    Posted

    Hi tanee2

    I understand your omg feelings. Unfortunately you do not have it under control yet with meds. Are you under neurologist care? I got it under control with 200mg Tegretol 4x a day every 6 hours specifically.

    Once you get it under control, you will get over the why me. It will be just a maintenance.

    If you are less than 45, I do feel for you.

    eddie13

    • tanee2
      tanee2 eddie13

      Posted

      Yeh it's not really why me it's just like I have voices in my head but they are painful.

      I tried Tegretol the side effects were awful. I think I do need still need to work out how to manage it.

      Im 29, for my 30th next month I was booked to jump out of a plane and I know I can't do that now Im not ready but maybe there could be a way in the future?

  • caryl33332
    caryl33332 tanee2

    Posted

    I agree with Eddie.  The drugs you are taking do not seem to be effective.  You definitely should be seeing a neurologist.  Are you aware there are treatments other than drugs?  The Trigeminal Association has much information about drugs and treatments.
    • tanee2
      tanee2 caryl33332

      Posted

      Thank you Caryl Im seeing a pain therapist and have got planned appointments with a pain clinic but I haven't got an appointment until the end of the month.

      I feel a bit lost to be honest. I haven't had any support really just been told how to take meds. They said there are patches i can put on my face so i can go out i the wind without crying..

    • caryl33332
      caryl33332 tanee2

      Posted

      Can you get an appointment with a neurologist?
  • fed-up
    fed-up tanee2

    Posted

    hi, sorry you have to join the club. you need to get your medication right, best one by far is Tegretol and gabapentin. you will not have relief with Amitriptyline.

    i was on oxcarabazepine and i was on the maximum dose of that and gabapentin. what i was doing was taking them like painkillers. i am now on 400mg teg and cut right down to 900mg of gab. its a long road and you have to find a doc who will work with you.

    when i first went on tegretol the side effects were horrible but i have gone back on them and never had a side effect at all.

    i have read that using a straw will hurt more and stress will make it worse, easier said than done.

    • tanee2
      tanee2 fed-up

      Posted

      I found tegretol gave me such bad sickness I couldn't keep taking it, I stopped after 4 days.. Would you recommend staying on it? I found with neaurotin that I got used to the dizziness/vertigo after a month but nervous to try any more as I felt like I was swimming when I was walking? Did you have same problem? X
    • fed-up
      fed-up tanee2

      Posted

      i would say give tegretol another chance, when i first went on it, it was awful! but tried a second time and had no side effects from it at all. 

       

  • Valkyrie
    Valkyrie tanee2

    Posted

    Hi there,

    please reveal what wonderfully sensitive, intuitive and learned person told you that you would have tn forever without giving you a way to go forward. Did they just leave it at that or did they refer you on to a Neurologist. If it was a neurologist, may i suggest a second opinion as the person who said that to you was an insensitive person with clearly no idea of the pain they were leaving you in the hands of. Please continue to be a part of this forum. We are interested and many people here have a lot of knowledge to offer you

    • tanee2
      tanee2 Valkyrie

      Posted

      Well they said as there has been no change in my condition that it is more than likely to be permanent. They have given me a pain specialist, I'll get a therapist and they do havens neurologicist available but they think I will control it with medication. My reaction to some of the medicines has been pretty horrific but I'm not finding enough relief with what u have and my actual doctor doesn't understand the condition at all sad so is being quite difficult.
    • Valkyrie
      Valkyrie tanee2

      Posted

      I agree with Carly's comment above. You must try to insist on seeing a neurologist and then ask what alternatives are available. Tn is different for everyone. Some control it with medication and have to change it from time to time, others find that an operation is better for them. Dont give up. Unfortunately, just when you feel at your weakest is when you need to be at your strongest. My neurologist was shocked when i asked for a referral to a surgeon for Gamma Knife. He was then intrigued and asked me to "keep him in the loop" so he could learn more. Tn is strange and its hard sometimes to cope, we all know this. Sometimes the doctors dont understand. Keep strong, keep warm (it helps) and keep moving toward something that will help you.
  • heather30609
    heather30609 tanee2

    Posted

    Hi tanee2 - this might help - try to ensure that you take your medicine at equally spaced intervals throughout the 24 hours so that you have a constant level in your blood stream.  I did this by setting alarms on my smartphone so I wouldn't forget (!) and since then, I've had no break through pain at all.  Of course, it might be that the TN is quieter at the moment anyway, but its worth a try.
    • tanee2
      tanee2 heather30609

      Posted

      Thank you for this, I have increased my dose so I don't get caught out, I do sometimes forget or loose track of what i ahve taken so Im going to set my alarm thats great thank you. .. it's just being in the cold now that is unbareable but doctor thinks she can give me some patches to put on to help.. Everyone on here has been so kind, thank you so much.

  • latonya_19949
    latonya_19949 tanee2

    Posted

    Hello, tanee2

    I have very similar symptoms. A few tips helped me with the difficulty brushing, try using warm water, a soft brush with gentle strokes and no swishing or puckering to spit out the toothpaste, just kind of let it drizzle or drool out on the side with less pain. I know it sounds kind of gross but it helped me. It's still painful but these tips helped.

  • Valkyrie
    Valkyrie tanee2

    Posted

    i am currently using my wheatbag for a little heat near my face on the painful side. I cant actually touch my face with it so i just kind of hold it near so i can feel the heat from the bag. Chemist gave me some numbing gel for when its less bad (i am trying everything i can get), i use Sensodyne toothpaste which i use to very gently brush my teeth on the other side then kind of swish it so so carefully across the other side then brush a little closer. I can only brush my teeth on that side sometimes. I cant drink through a straw because as latonya says, puckering is just awful and i use her method for cleaning my teeth also with the drizzling out the side of your mouth.
    • tanee2
      tanee2 Valkyrie

      Posted

      Hello sorry for late reply, you mentioned puckering ... I'm finding that I cannot kiss without kind of crying the specialist says I'll learn how to block out the pain.

      Is that true? It's really getting me down other than that I am taking all of your advice and trying to life life as normally as possible. X

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